How Being at the 'Mid-Point' Between Sick and Healthy Leaves Me Feeling Misunderstood

The past month or so, I have seen a lot of movement. The things that are on my bucket list that I never imagined I would be putting a check mark next to are being checked off, one by one. The bucket list in itself is saddening for me to look at. To think, those are the things I wanted only a short nine months ago that I thought would be too difficult for me to achieve. I remember when I was writing it out after the new year, thinking to myself that I wanted to write things that were out of my goal range. Things I never thought I would be able to do by now. It is all happening though, and organically. Nothing feels forced, but at the same time, it is very difficult.

For awhile when I began to write about and share my struggle through a few websites, I had so much to say. The writing and articles would flow out of me. This left me with a sense of relief and it was therapeutic to share it all and know I was helping others. The more I heal though, the more difficult it is for me to find the words to say how I feel. I am at this mid-point. I am not where I want to be, but I am no longer bedridden. For two and a half years, I did everything in bed, so it is strange for me to look back at those years and imagine how I did it. Where I am at now is still not very far from that though, but I am not sick, and I am not healthy. I do not know what I am.

When I share where I am at in the IV lounge with other patients, I am no longer as sick as them so I cannot relate as much as I used to. When my healthy friends see me looking more healthy I have to explain that I am still very sick and although I look less like an extra on The Walking Dead, I am still not quite there yet. Most times, it is easier for me to hold it all in. To just keep it to myself, but keeping it all in makes me feel like it dams up inside of me and makes me want to physically and emotionally burst. At times I feel like I am about to spontaneously human combust.

So what now? Where do I go from here? When I post a picture to social media and everyone assumes I am miraculously healed and doing well, do I explain myself to them? Or when I am having a tough day and run into a friend and open up to them that today is not a good one and then I do not hear from them again for a few weeks. Usually people wait a few weeks to catch up again, until they think it is safe to call again because maybe by now I am doing better. Is that a real friendship anyways? Do I continue to cover up the bruises, hide behind a smile and pretend it is all OK? When someone is sharing with me struggles in their own life and it is time for me to share with my own, do I hold it in because when I tell them how bad this all is, really let them know, it makes them feel guilty because their issue is not as messed up as my own? How do I explain to them that although their mountain is my molehill, it is still their mountain? We cannot compete with one another on how screwed up our lives are.

I do not have the answers here.

When you fear sharing who you are to the core because it is isolating, because often that pushes people back away, it is a scary place to be. When you are surrounded by many amazing human beings, but you feel like no one can possibly understand what you are going through, that is because they can’t, no one can, because this is your story and your story alone. Having a major health issue is a challenge. When we heal, that challenge does not simply disappear and then things become normal again, and honestly, what is “normal” anyways? Feeling misunderstood and unvalidated is a major aspect of any chronic illness or disability.

After going through this long and trying experience, I often wonder if I will ever get to a point where I do feel heard, where I do feel understood and where I do feel comfortable sharing my story. Maybe I won’t ever reach that part, but that is OK. Sometimes our stories are good and sometimes not so good, but this is my story and even though it is not a fairy tale where everyone ends up happily ever after, I am learning to see it less as a nightmare and more of an honor. I am learning to share with the right people and at the right time. Some days I have nothing to say and some I have a lot. This is another part of my journey. So although I feel like I have nothing to say, I still feel misunderstood, so that must really mean I have a lot more to say and just don’t know how to do it. Maybe in time that part will come easier. But for now, I am doing the best I can.

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